Limbo

I have not written much since I feel like I am just keeping my head above water. Liberty has had constant puzzling symptoms which I am sure are due to the side-effects of DMSA chelation. We have one more round to give next weekend and then we will do his first battery of testing to see what he has spilled.

Liberty is doing well, overall, I think. But the summer is looming. The country's economic situation has spread to the schools. I learned today that 200 positions are being cut, that means his classes next year will be enormous and aides for the teachers will be reduced. Our children need small, manageable classes, so I am unsure what will happen. It is now March, so IEPs are on the horizon, the summer must be planned, and we are waiting on information...what services are covered by insurance and what are not, which therapists are available this summer, do we do a listening program or ditch it? Horseback program? Swimming? ABA? Summer camp? No word on the camp yet.

I think most of us won't know what will happen with the school situation until late in the summer when the funds from Obama for special ed will come in.

I will be posting more frequently I am sure in the coming weeks. We are heading to a new DAN doctor who happens to be a neurologist. How fantastic is that? I am hoping to get some more answers, find out where we are in this crazy maze. I feel we are in a new phase. My son is getting older and though he has progressed in many ways, still there is no speech and he will be seven years old in July. I never thought we would be here, but here we are.

So, I need pictures of his brain. I need to know once and for all what it is exactly we are dealing with. You know "these days" diagnosis takes place in an entirely different way. When Lib was diagnosed (over 4 years ago), all they did was parade my 23 month old boy around a room, ask him to do certain things, then handed me social security disability papers and sent us on our tearful way. Now, I have heard they would not dare diagnose a child without a thorough neurological examination which includes MRI, EEG, consult and a massive battery of labs. We never had any of it. And, not one person along our way has EVER suggested it.

I have tried to get EEGs here but the only office in town is just horrible. Parents tell tearful stories of the way they are treated. On our last visit, they gave my boy Benadryl without asking me and he went bonkers for 2 days and we STILL got no EEG. The first visit, he had an abnormal pattern only in his occipital lobe and the doctor here (if you can call him that) was very nasty to me because he found out I was one of those biomed moms. In a nutshell, the bastard told me that Lib could have a seizure and die at any time, but have a nice day. I should have reported him right then and there, but I was too wounded like so many parents are. (He went on to say the gluten free, casein free diets are a bunch of crap).

So, when I trooped back to see a new associate at the-only-game-in-town horrible clinic, he told me it was nothing to worry about! That children had abnormalities in the occipital lobe all of the time. About a month after that, I saw Lib have absence type seizures, took him back and we had the whole Benadryl experience with no EEG done.

So we are still left hanging in the breeze.

I am praying we get some answers and that this new doctor will help us find them. I have heard good things about him. I am cautiously optimistic - if there is such a thing.

Back later. Film at 11 as they say.